The irony of having written a post just this week about getting out of the house more as a family has not escaped me as I sit here in my house on a rainy Friday, with a broken lift outside in the garden.

As many of you will know, we had lifts fitted in our garden in February 2014, funded by a Disabled Facilities Grant and facilitated by Cornwall Council, to enable us to get in and out of the house with Orange in his wheelchair.

The construction works were fraught with difficulty, in the hands of wide boy contractors and a council adaptations team that didn’t know what they were doing, or were off sick or on leave throughout the project.

As a result we were left with lifts that never worked reliably from week one, and a garden completely obliterated by builders who decided to work to their very own unique concrete obstacle course design.

For the past three years, we have complained and negotiated with the council to rectify these problems. To provide us with lifts that work, and to rectify the dumpster fire that is our garden.

I wrote about it in this post from August 2015, when our lift dangled open dangerously leaving a two metre drop for one of us to fall in. This made front page news locally and finally kicked the council into action to think about rectifying the issues.

Being diplomatic, it has been a learning exercise for the council. For 18 months.

At times, we have even felt listened to by the council, and that we had made progress together, and helped them to improve their processes for managing Disabled Facilities Grants.

Today, three years since the first ill-fated works were done, we were due to have our kick off meeting with the council adaptations project manager and their engineer and the new contractors to discuss the new works.

I had hoped this evening to write a really positive and happy post, celebrating that we had a start date for new works to begin, and that we had got through this difficult process with the right outcomes, that the council had listened and learned from their mistakes and this would help not only us but other families needing adaptations works in the future.

Unfortunately I cannot. Because the council have let us down again by deciding not to show up to our kick off meeting. They cancelled it fifteen minutes after they were due to arrive. Apparently because they could not drive to us in the rain, down roads that both we and the double decker bus and countless other vehicles had no problems with this morning.

Instead, I have spent the last two hours writing a complaint to the Local Government Ombudsman and calling a lawyer, as well as negotiating with the council yet again to send an engineer to fix the broken lift outside.

If I were to count up the hours, days and weeks my husband and I have spent trying to resolve the issues related to our home adaptations, the countless lengthy meetings, emails, phone calls, coaching the council through their own management of the contracting firms they hire, or how to dial in to a conference call (I kid you not), and negotiating with them to fix the mess they have caused, I have no doubt at all of the significance.

And yet this issue is not unique. Up and down the country there are families dealing with the same issues. Funding applications that are declined, council adaptations teams giving bad advice on where equipment and adaptations should be fitted, work being undertaken poorly so it has to be redone, families with broken lifts who can’t get in or out of their own homes.

It’s an issue that the Local Government Ombudsman has investigated repeatedly in the past and need to do again. It needs a national spotlight on what is a systemic and endemic problem affecting families all over the country.

Disabled Facilities Grants should be a good thing. To enable families to do basic things like get in and out of their homes, move around and bathe, eat and sleep safely. And yet it isn’t. Often it’s a disaster.

I will be writing to Penny Mordaunt MP, the Minister for Disabled People who I met last week at Westminster. I will also be writing to the Womens & Equalities Committee who have disabled adaptions on their radar and were discussed just this week.

If you have had an issue with Disabled Facilities Grant adaptations, please do the same or feel free to share your story here if you would rather stay anonymous. Equally if you have positive adaptations stories to share please do so we can shine a light on good practice!

Four walls and a roof over your head? A place that you love, where you feel safe and happy? Somewhere that you can make your own?

Filled with trinkets, dust and clutter or Kon Mari’d to the hilt, a garden with pinstripe lawns and bursting with flowers, or over flowing with children’s toys, are our homes not are an expression and extension of ourselves, who we are, and the people, experiences and things that are important to us?

If you’re a Five Year Planner, a Zombie Apocalypse Prepper, or a fan of lists and spreadsheets (like I am) you will understand how moving into a very old house desperately in need of a top to toe refurb (as we did) and not being able to do it, or even plan properly for how you might do it, (as we haven’t) is enough to make you want to run away, drink gin and live in a tent.

Four years since we moved in, really, I just want to put the whole house in Room 101 and hide under canvas on a cliff top. Right now our home unabashedly tells the story of us floating about in limbo, of hopes as yet unrealised and of best intentions to help from the council that failed.

Because as much as I’d like to start re-landscaping gardens, ripping out kitchens and replacing windows, we have had to hold fire on everything but refitting the makeshift loft extension because we have to adapt our house for Orange. So he can do simple everyday things like get in and out of the house, move around the house in his wheelchair, sleep, eat, bathe and dress.

Our first attempt at adaptations didn’t go so well. You might say.

Expensive. Tearful. And full of F words and C words I don’t wish to repeat.

For the last two and a half years, our garden has been impersonating an industrial wasteland (we are sorry, beautiful Downderry), with lifts that don’t work how they should, concrete paths that shouldn’t have been laid and a striking 1,000 litre plastic oil tank as a stand out feature piece, sitting taped and cracked, proud and high like a mocking memorial to the whole sorry, and expensive, process.

“Beautiful sea view you got but, you know, I just adore that tank!”

We didn’t want lifts in the garden just for kicks. For the Waitrose man to bring the shopping up in or for snails to find comfy homes. After falling down the steps carrying Orange, we needed adaptations and we needed help from the disability adaptations experts at the council to get them right and help us fund them via the national Disabled Facilities Grants scheme.

A system supposedly set up to help people just like us.

And yet the system failed us when we were at our most confused and afraid, with a little boy who couldn’t walk but no-one could tell us why or whether any of the gruelling physio and therapies we were instructed to do every day would actually ever help.

An ill-conceived job, put into the hands of people who were quite happy to take the council’s Disabled Facilities Grant money and disappear off on holiday to Goa, leaving ancient and decrepit workmen who should have long retired to complete a job they were unfit and unskilled to do.

I am relieved and happy to say that the adaptations team at Cornwall Council have made a lot of changes to how they do things since our experience. There are some dedicated, kind and thoughtful people in their team who have listened and who really do want to make things better.

But that doesn’t change the fact that the cost to fix this mess and to build a safe and functional way in and out of the house for Orange is eye watering.

And like a string bean, the boy just keeps growing. It’s not just the outside that needs adaptations, but the inside of our house now too.

I have walked miles around my own home over the last couple of years, trying to visualise where a through-floor lift might go, how we might fit in an adapted bathroom for Orange, where ceiling track hoists might go…

Do we need to widen doors? Move the stairs?

Change bathrooms into bedrooms and bedrooms into bathrooms?

What is that pipe? Where does it go?

Do we need to lift the flagstone floors?

How much will it cost? Can we afford it?

Help.

And so four years in, we are campers in a home we haven’t yet really made our own. With the exception of the living room which has been adorned with the permanent marker of a small girl who thought the ambiance would be much improved by a giant black lighthouse on the wall, we can’t do anything much at all until all the adaptations are designed, built and paid for.

All tent jokes aside, we have considered moving. We really, really have.

But it doesn’t solve the problem that whatever house we live in, we will have to adapt for Orange. And there really are no step-free bungalows on a flat piece of land, with wide doorways, hoists, adapted baths and enough space for a growing family anywhere within a sensible commuting distance of the children’s schools and work.

There just aren’t.

In truth, at £30,000, the DFG is a dinky pebble in the ocean when the cost of a lift alone can be £20,000. Even with a DFG for the outside, and a DFG for the inside, we will need to find money in the tens of thousands to get the jobs done and have a house that is functional, habitable and doesn’t look like a hospital. Or an industrial wasteland.

It’s just the way it is.

And so with blind faith we are leaping into the chasm of asking the bank for large amounts of money and hoping that eventually we can one day pay it back.

Because what is the choice? Really there is none.

When people are surprised that I have fought to maintain my career, that I work a full time job while being a parent carer, this is why.

It is one of the reasons why I don’t take kindly to criticism of me being a full time working mother, from those who think I should be a ‘rock’ at home for my children, or that I have ‘made a lifestyle choice to work’ (yes, there are still people who think this way).

It is why I will continue to campaign for the rights of working parent carers to hold on to their jobs when people and systems around us tell us that we shouldn’t or that we can’t.

Because disability is expensive. And the more disabled you are, the more expensive it is.

And so until I can galvanise to campaign for Disabled Facilities Grants to cover the actual cost of adaptations (because right now, they don’t touch the sides), we, and many other families alongside us up and down the country, step, headlong, into the Money Pit.

You may also enjoy:

Ever had the lift break down in your office and had to take the stairs ten floors? It’s annoying, isn’t it?

Now imagine you couldn’t get in or out of your own home without the aid of a lift. And when that lift breaks down you are either housebound or stuck in your garden in your wheelchair, unable to get in.

Then imagine that the lift has broken down almost every week since it was fitted over a year ago. And that you have no emergency contact or plan in place for when it breaks. Not for want of asking…

That no-one wants to take responsibility for the problems. The very long list of problems that don’t isolate the fault to one part but suggest a fundamental issue with the lift in its entirety.

A lift that stops operating weekly because the door catches decide to do their own thing.

A lift that stops working completely when it rains.

A lift that has been known to open before the platform has reached the top, leaving a gaping two metre drop in front of you, your 4 year old in his wheelchair, or perhaps one day it will be your 6 year old daughter who likes to help by calling the lift up and then accidentally falls…

It needs replacing. But Cornwall Council, who commissioned the fitting of the lift, and who have admitted in writing that:

“The lift is not fit for purpose”

…still haven’t actually done anything to rectify the problem. Sending lift maintenance companies and manufacturers to tinker with bits of the lift every month has not solved the issue that we have a lift that continually breaks down, sometimes dangerously so, leaving us and our son housebound.

Not able to get to school. Not able to get to work. Housebound.

Today, our son has a physio appointment he must attend. We cannot get him there unless we physically carry him down fifteen steep steps. If you’ve ever carried a child with severe hypotonia you’ll know that’s something you really don’t want to do. As I found out two years ago when I fell down the steps while carrying him, injuring my back and dropping him on his face. The very reason the lifts were fitted in the first place.

I have quietly and determinedly dealt with this behind closed doors, giving both Cornwall Council and the lift companies the time and space to deal with any ‘teething problems’ we might have experienced since the lifts were fitted.

Wessex Lifts have been polite and accommodating and seemingly thorough but the situation remains that we have a lift that doesn’t work, that we can never rely on, and that we are back to where we began, manually lifting a child and a heavy wheelchair, having to rely on our own physical strength and the kindness of the school taxi driver to help.

I am sharing this publicly now, because we have explored all avenues for help within the Council, Dolphin Lifts and Wessex Lifts.

On 8 April 2014, a technical officer from Cornwall Council emailed me to say:

“I can assure you these problems will be rectified”

On 12 January 2015, the manager of the council adaptations team said:

“The lifts have only been in place for a year or so and I would not expect the level of problems that have been reported. I would expect Dolphin to visit ASAP and sort out the issues.”

And on 9 July 2015:

“When a lift is no longer serviceable then we will consider providing a new lift through a Disabled Facilities Grant…”

but in the same sentence…

“I am very sorry they are experiencing these problems and that I cannot offer any solution to them. I will raise the subject at our next management meeting and update you on any decisions taken.”

…And yet here we are, almost 18 months since the lifts were fitted. Stuck.

You may also enjoy:

I don’t often watch TV. This isn’t cultural snobbery on my part. It’s more laziness, in that I can’t be bothered to find out what’s on, and denial, in that I most definitely now need my glasses to be able to see and operate the thing. It’s far easier to pretend there’s nothing on that I want to watch.

But tonight there was. Tonight, a programme that I’ve been meaning to tune into for a while but have kept at arms length because it’s often just a little uncomfortably close to home, was airing an episode I couldn’t not watch. This episode of DIY SOS was brought to my attention by one of the lovely SWAN mums who has become a good friend and I decided it was high time I put my own fears to one side and give the programme the attention it so deserves.

For those who don’t know, DIY SOS ‘The Big Build’ on BBC1 is Nick Knowles and his team, recruiting teams of volunteers to transform the homes of families across the UK. Often, they choose families who have a disabled child for whom essential home adaptations need to be made in order for normal family life to continue. They work tirelessly to provide accessible, homely, stylish living accommodation for families in need.

Before Orange, I had no concept at all of how inaccessible most homes can be for a disabled person and the strain this puts on the entire family to manage, to cope when, actually, their home offers them anything but comfort. Stairs, baths, toilets, beds, uneven flooring, sloping gardens, previously un-noticed, quickly become a major barrier to family life. (As Orange gets bigger, and heavier, and no more aware of danger, I am beginning to understand the complexity of this challenge. Much of our home is easily adaptable, at a cost. Much of it, less so, or at vast expense. Having no idea what Orange’s future holds makes it somewhat easier to stay in denial. Or hope, if it’s a good day.)

The team at DIY SOS completely get it in that they totally transform family homes to meet the complex needs of a disabled family member, while also remembering that this is a family home. A home to be loved, enjoyed, laughed in, relaxed in. Not just a functional space to be peppered with plastic equipment and plastered with vinyl, like so many local authorities would have you believe. The DIY SOS team achieves something wonderful and life enhancing. They do so, all the while maintaining the dignity of the entire family and allowing them to be normal in their own home, perhaps for the first time in years. To do regular family things, like sit around the table together at a mealtime, or enjoy each others company in the garden on a sunny day. To take a bath, without breaking the back of another, or to safely get in and out of bed, or to the loo. Simple things that most of us do without a second thought. All without ripping the heart out of a family home and rendering it a makeshift hospital, or leaving it resembling a 1980s council run day centre.

I watched tonight with my heart in my mouth because we are just starting the process of applying for council grants to adapt our own home to suit Orange’s needs. This is often the first step, for most families who need a home adapted due to disability and is known as a Disabled Facilities Grant (a bureaucratic nightmare of course, and sometimes this works out, other times councils find lots of spurious reasons not to help.) Due to cost, we are having to do this in stages. The garden adaptations to fit a lift and ramping will likely exceed £30,000 alone. This is before we even start on the inside of the house, with its uneven slate flooring and narrow cottage staircases. It’s going to be a long road but I am hugely thankful to Orange’s occupational therapist who is supporting us all the way. She is worth her weight in gold and we are extremely lucky to have her. At the moment I am cautiously optimistic things will go our way.

But more than that, more than anything, I am thankful that we have our lovely boy with us. The family in tonight’s episode of DIY SOS will forever hold a little piece of my heart. They lost their gorgeous young boy just months after their home was adapted for their needs. The practical challenges of making their house a safe and manageable family home were, ultimately, surmountable. With human kindness, money, hard work and community spirit those needs were met. But nothing can fix the loss of their beloved boy.

Tonight, I snuck up into Orange’s room and gave him a long, warm cuddle. Snugged up in his bed with Bert, Ernie and a number of other cheery little characters, he slept peacefully and comfortably as I wrapped myself around his warm little body. And I felt thankful. So thankful. He is here. Everything else, we can conquer.